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FARAFARA Cure FA

Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


Ben Tyler

Ben Tyler 2Name Ben Tyler

Age 35

Where do you call home? Alton, IL (across the river from St. Louis, MO)

Education degree(s): Bachelors of Science in Nursing, I am an RN. I am not able to work as a bedside nurse due to FA. Fortunately, there are many areas I am able to work. I am in Case Management at Barnes Jewish Hospital in St. Louis.

Read more: Ben Tyler

Giovanna Moreschi

Giovanna 2Name: Giovanna Moreschi.

Age: I am 20 years old.

Where do you call home? São Paulo – SP – Brazil

What are your educational goals? I study courses in psychology. Even though I have FA and many difficulties, I do not give up and do not stop believing that I will build my career!

Who do you live with? I live with my parents and my two sisters.

Read more: Giovanna Moreschi

Kay Krankel

Kay KrankelName: Kay Krankel

Age: 83

Where do you call home? Currently, my home is a skilled nursing facility in Scranton, PA.

Education: I made it through one year of college when I got the job I wanted.

Who do you live with? I have been married for 60 yrs. We have five children and sixteen grandchildren.

What's a typical day for you? Currently, a typical day for me includes lots of reading, playing bingo, and occupational therapy. Every other week, facility-sponsored entertainers visit.

Read more: Kay Krankel

Jordan Murphy

Jordan MurphyName: Jordan Michael Patrick Murphy

Age: 25

Where do you call home? Chuluota, FL

Education: High School Diploma, some college

What's a typical day for you? A typical day for me includes various appointments, personal care activities, and, truthfully, at this point, much daydreaming.

How long have you known you are living with FA? I was diagnosed at age twelve but was symptomatic at a much younger age. It took a long time to diagnose. We were lead to believe my flat feet were to blame for my un-coordination. I've known for thirteen years.

Read more: Jordan Murphy

Megan Leeper

Megan LeeperName: Megan Leeper

Age: 21

Where do you call home? Burleson, Texas. The DFW area.

What is a current goal you have with your education? I am working on getting a Bachelor's degree in psychology with a focus in forensics.

What is your relationship status? I currently live with my parents and two dogs.

What's a typical day for you? A typical day for me is pretty laid back since my schooling is now online. Physical Therapy is twice a week, and because I struggle with fatigue, I am mostly a homebody.

How long have you known you are living with FA? I found out I had FA after a nerve biopsy. Every doctor struggled with figuring out what was wrong. My genetics were examined to confirm FA.

Read more: Megan Leeper
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